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12-02-2009, 02:51 PM
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#1
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Chelee - Clinical Trial at COH - do you qualify?
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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12-02-2009, 10:09 PM
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#2
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Chelee - Clinical Trial at COH - do you qualify?
Hi Gerri, It does look like I do qualify for this one. I just saw my ortho this last Tues. and got the ok to start chemo. I'm due for my Herceptin Monday, & I've been "trying" to let her know I plan on starting chemo this Monday when I come in for my Herceptin. Her and the "COH" onc both had agreed on the Navelbine/Herceptin/Zometa.
However the COH onc did mention to me that they would be having a TDM1 trial...it should be due about now? I checked the locations on the trial and I don't see Duarte listed? But tomorrow I'll make some calls and see about this? I just don't want to many more delays in my trt. It's already been over two months and that concerns me. I know with the trials you have to have the "washout" period of 21 days which that would work for me right now. But then you have to have all the scans, EKG, ECHO, brain MRI, etc. It would be ok if they could get that done in less then a wk for me? Anyway...thanks for posting this...I will check into this tomorrow. Much appreciated. I'm still trying to recuperate from this hip surgery...I'm just beyond misrable...can't imagine doing chemo or anything right now...but what choice do I have.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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12-02-2009, 10:57 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Chelee - Clinical Trial at COH - do you qualify?
Dear Chelee -
You are one brave soldier in our legion and I know you will find the energy to get on the phone and give this one more whirl.
If you are like me, you want to know you have exhausted the possibilities and are satisfied with the present course of action.
If there IS a trial that is not listed (Chrisy said not all the locations are listed, and you have to dig around to find them all), then you will find out.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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12-03-2009, 03:09 AM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Chelee - Clinical Trial at COH - do you qualify?
Steph, Actually I don't feel like I have any energy left...but I better find some. I've never felt so drained mentally and emotionally. Every time I think I have a plan some other challege has been thrown at me. I have been set to start chemo 3 or 4 times now and something always stops it. But after being put off so long I do want to make the "right" decision/choice for myself. I've been so worried about my cancer spreading in all this down time.
Chrisy is so right about the trial locations....they aren't all listed...you really do have to do some digging around. I found that out after Dr. Slamon told me about the TDM1 trial he wanted me in. The two locations he told me about weren't mentioned on the clinical trial website. My biggest problem right now is I feel like I have to do something now. You reply & support will give me that extra boost I need to make the call. Thanks Steph!
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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12-03-2009, 03:18 AM
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#5
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Chelee - Clinical Trial at COH - do you qualify?
Go for it Chelee!
I understand how drained you are and frustrated. If you trust Dr Slamon then pursuing his recommendation is the right thing for you to do.
I have just read your other post about the biopsy results.Do you need him to review these results to see if his original recommendation still applies given the change in status of the mets? Just a thought.
Ellie
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12-03-2009, 03:32 AM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Chelee - Clinical Trial at COH - do you qualify?
Ellie, That is a very good question, and one I am very curious about myself. That's why I posted that here tonight in hopes someone could tell me something? That is a big change. Dr. Slamon said the TDM1 trial & the Tykerb/Herceptin combo would be good for me since I was "So Her2 pos". How did I go from Her2/Neu, 3+++ to Her2 negative (1+)? Er 15%...to Er 60 %?
I don't think I can get Dr. Slamon to review my bisopy report at this point. I was only a consult and paid cash to see him. Hopefully my onc and the 2nd opinion onc I saw at City of Hope will discuss my recent biopsy report before I start any new treatment. I figured the bisopy report would still show me Her2/Neu 3+++...I don't know what to think at this point about anything.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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12-03-2009, 09:17 AM
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#7
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Chelee - Clinical Trial at COH - do you qualify?
Chelee,
Sorry, I posted that in a rush yesterday and should have given you more info. Here is the link to the COH Clinical Trial page that lists the trial http://clinicaltrials.coh.org/specific_result.aspx it is the third one down with Dr. Solmo as the PI - I believe he is the head of the Breast Cancer department. The study is also at Breastlink in Long Beach (probably closer to you) with Dr. Link as the PI. I know all of this is overwhelming to you with all you have going on. I hope you are able to look into this (if interested) and see if the trial is right for you.
I am so sorry to hear that you are in so much pain and are recovering slower than you hoped. Please know that I am thinking of you and wishing you better days ahead.
Big hug to you,
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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